Wednesday, March 25, 2015

As my dear friend AnneMarie said to me recently, I'm spinning like a top lately. We all seem to be. Is it that it's going to be 95 degrees in Phoenix this weekend, so we're all scattering like ants about to be scorched? Is it the swarm of spring breakers here, so traffic is unrelenting lately?

Except it's not just confined to Phoenix. Life seems to be moving at breakneck speed for just about everyone I know, and suddenly I'm thrown back to Quinn's statement that we are "the busiest people EVER" and reminded that I need to slow things down a bit. I need to relax. I need to breathe.

Just as soon as I've gotten everything ready for this silent auction and yoga event on Saturday. (Will you be there?)

I'm so looking forward to being able to practice alongside the lovely Jenn Chiarelli and this entire community -- my village -- that has bolstered me up over and over again over the past several years.

Many local and regional businesses, artists, designers, healers, and yoga practitioners have donated their goods and services to make this event a huge success. I feel confident saying that before it even happens, and I wish there was a way all of you could come participate, too. I promise to take lots of photos and do my best to sum up the day while I'm still basking in the glow of it early next week.

To all of you who've donated, from the bottom of my heart, thank you. Or as I'll be saying on Saturday, namaste: I bow to the divine in each of you.

Wednesday, March 18, 2015

One woman posted on Facebook, “It is hard to explain to your family why you’re crying over the loss of someone you’ve never even had a cup of coffee with.” Another explained our collective crying, in part:

#bcsm When a cancer sister dies, it is unavoidable: terror of our own death coming by the same means arises, unexpected and strong.
— Xeni (@xeni) March 9, 2015

It's not just fear of our own mortality, of course. We also miss our friends.

I am not alone in missing Lisa's wit and quick comfort. Even in 140 characters or less, she knew how to get straight to the heart of a matter, what to say, how to be a friend, the right words to use to educate the rest of us about clinical trials, palliative care, end-of-life decisions, and how to stay positive through it all (to paraphrase: find or create a bit of beauty).

My friend Renee's birthday was this week. I miss her, too. And Brigid, and Jen, and far too many others to list here.

So, yes, we grieve for our friends. But there is a large dose of fear. We who are living with metastatic breast cancer can't help it. We wonder: when will our luck run out? How will our families cope? Will our children remember us? Have we done enough to leave our marks, given our limited time (and energy)? Will there ever be an end to this disease? Will it (could we dare to hope) be in our lifetime?

Here is a round-up of the news and research that I hope is moving us in the right direction. My hope sustains me. It brings me out of my fear. Here's to hope. And research.

"Apple could have slapped a pink ribbon on their iPhone cases during October, or donated a percentage of their October pink iPhone sales to one of the breast cancer organizations, and called it a day. Instead, they chose to put skin in the game, working with Sage Bionetworks to develop ResearchKit -- a completely Open Source (read: FREE) platform for the medical research community to help collect patient-reported data efficiently, effectively, and inexpensively."

"Changing cell shape – through mechanical, chemical or genetic means – could be a new way of assisting the body’s own inflammatory response to fight cancer.

“Interest in using the body’s own inflammatory response to fight cancer has been reinvigorated recently because of the promising results of immunotherapy. Our study further supports the need to explore the role of inflammation and cancer, in order to enhance treatments and the body’s own ability to eliminate cancer cells.”

'Cancer cells are in a battle against the body’s natural failsafe mechanisms that seek out and destroy them. This study underlines the importance of a cancer cell’s shape in helping to tip the balance in its favour, not only dodging an immune reaction but actually thriving in response to it. It also shows that manipulating cell shape could help tip the balance back against a tumour.'”

"Poziotinib is a novel oral, pan-HER inhibitor that has shown single agent clinical activity in breast cancer, gastric cancer, lung cancer, and colorectal cancer, and is currently being studied in several Phase 2 clinical trials.

Poziotinib has shown a remarkable 60% response rate in early clinical trials in patients with breast cancer who had previously failed multiple lines of treatment, including HER2-directed therapies trastuzumab and lapatinib."

"A major international clinical trial has found that the risk of sudden onset of menopause can be significantly reduced by adding a drug called goserelin to the chemotherapy regimen. Women who took goserelin and wanted to have children also were more likely to get pregnant and deliver a healthy baby.

'Some of the most distressing side effects of chemotherapy in young women with breast cancer are early and sudden onset of menopause and infertility,' said Kathy Albain, MD, senior author, medical oncologist and Director of Loyola University Chicago Cardinal Bernardin Cancer Center's Breast Cancer Clinical Research Program. 'These findings provide hope for young women with breast cancer who would like to prevent early menopause or still have children.'"

"The Food and Drug Administration approved the first copy of a biotechnology drug for the U.S. market, firing the starting gun on a new industry that could help the U.S. curb its $376 billion in yearly drug spending.

The drug is a rival version of Neupogen, an Amgen Inc. treatment prescribed to chemotherapy patients."

I never needed Neupogen. Instead, I was given Neulasta, a similar drug that is long-lasting rather than fast-acting. Both work to stimulate white blood cell production. My Neulasta shots cost something on the order of $6,000 per infusion, and I got one after every treatment on my old chemo.

"The FDA’s recent approval of the first PARP inhibitor, coupled with current research, suggests that this new class of targeted therapy has great potential to help not only patients with ovarian cancer for whom the agent is indicated but also individuals with breast cancer. Mark E. Robson, MD, clinic director of the Clinical Genetics Service at Memorial Sloan Kettering Cancer Center, presented on this topic at the Miami Breast Cancer Conference.

“It is an exciting time. We have an approval for olaparib (Lynparza) in ovarian cancer and there are active phase III studies for olaparib and other PARP inhibitors in metastatic breast cancer for patients with BRCA1/2 mutations,” said Robson."

Monday, March 9, 2015

Last Friday you turned four years old. FOUR. How the heck did that happen? One minute you were my baby boy learning to walk, then you were climbing up and out of your crib with aplomb, and now you are all mud-loving, solid, strong boy, knocking me over with the force of your hugs. Saturday night as I was tucking you into bed, you asked me if you'd be three in the morning. "No, honey, you won't ever be three again," I said. And then the lump in my throat nearly swallowed me whole. Good-bye, three.

Three has been a challenge, I won't lie. But even as I write this, I can hardly remember whatever it is that I've found so infuriating. Already, I only remember you telling me things like, "Mama, when I think of hearts, I think of you." Or, "I'll go with you to keep you safe, Mom," when it's dark in the hallway. Or, when it was circle time at school and the teachers asked all of you what your favorite part of the morning had been and every other kid said playing on the playground or snack time, they told me your answer was, "Playing with my mom." Your love is my best medicine, buddy. You are my super-hero through and through.

Just the other day, on the way to your birthday party, after we'd packed the car with your confetti cake and dinosaur goodie bags to give your friends, you said, "Mommy, you're the best mommy EVER!" and smiled at me so earnestly I thought this is it. There is no greater happiness than this right here.

Your sweetness overwhelms me.

Alternatively, you say things that just about bowl me over, like when I asked you not too long ago why you were having such a hard time listening that morning and you said, "I don't want to listen to you because I just get so annoyed." As soon as I picked my jaw up out of my lap, we talked about why it's still important to listen even if you don't always like what people are saying.

Three going on thirteen. I spent the rest of that day either laughing as I retold the story or impressed by your vocabulary. Of course I think you're brilliant, but I am most proud of how much you care for the people you love, how kind and hilarious you are, how big you hug, how you don't hesitate to call me out when I'm being annoying. Pardon me, sir.

Quinn, you have such a zest for life, and I marvel at your ability to take it all in at a whopping speed, going strong and steady at least twelve hours a day, every day, without pause until you begrudgingly collapse into bed after talking me into just one more book, pretty pleeeeease. You have an insatiable curiosity about everything around you. Right now, you want to be an astronaut. You love dinosaurs and fossils (like your dad). You still love to climb--trees now, and your bed as soon as we'll flip it to a bunk bed, and the drawer pulls in our kitchen as if they're a ladder.

At night, you tell me you still have "five more energies," as part of your read me a fourth book strategy. Can I borrow some of the energies? The truth is, I feel stronger and more alive just being a part of your world. Thank you for showing me how it's done.

I am still putting you to sleep every night. I wait for your breathing to get deeper, for you to roll over onto your left side, bunny and kitty and owl and dinosaur tucked in with you, and then I sneak out if I haven't also fallen asleep beside you in your twin bed, Clifford the Big Red Dog as my pillow. You've started calling me out on it, knowing I will go into your dad's and my room to do some work on my computer, that you'll probably come in to join us at some point around midnight, and so you've started asking me if we can just start in my room instead. No, I say, let's fall asleep here first.

A few weeks ago, on a chemo day for me and when dad was out of town, you woke up as I was getting ready for bed. It was early, not even 10 pm yet. You'd had a nightmare, and your crying sounded as if you were still half-stuck in it, like the screams you wanted to scream kept getting caught in your throat. And then words started to come together, as I scrambled down the hallway to comfort you. "Where are you, Mom?" you choked through a sob, sounding panicked. Some spiral in my mind went immediately to the thought I can't leave him. This little boy needs me. I pulled you in for an embrace and said, "I'm here, buddy," over and over again until your sobs became hiccups.

Later, you told me you dreamt bad guys were taking me from you. So I promised you with all the truth I can muster and all the hope in the world, "I'm not going anywhere." For now, our luck is holding, my scans are still clean, and I am eternally grateful for these days, months, years with you.

Here's to celebrating many, many more birthdays together, buddy. (But slow down just a little, okay? We only get to do this once.)

Monday, March 2, 2015

There was a movement among the online breast cancer community yesterday to raise awareness for metastatic breast cancer, to call attention to a side of the disease that rarely gets talked about, to make some noise collectively. Stomp Out Breast Cancer Monday was the brainchild of Beth Fairchild (view her news clip here). The goal was to get the hashtags #dontignorestageiv #bckills and #metsmonday trending on Twitter, Facebook, Instagram, or wherever an impact might be felt.

I don't know about you, but my Facebook feed was filled with stories of women I have come to love, women who are facing this disease with so much grace it felt like my heart might burst reading through their experiences. One friend wrote: "The hardest part about living with metastatic breast cancer isn't the treatments. It's looking into my 9 year old's eyes and seeing the pain and fear there. Cancer is a thief that has robbed all of my kids of their innocence."

Then last night, because Quinn took a weird late-afternoon nap that lasted until 8:30 pm, I was able to participate in the #BCSM Twitter chat that takes place on Monday nights. I got to say hi to some old friends (and new) as we talked about what we'd seen on social media that day: what resonated, what worked, what could be done differently in the future, what our ultimate goal even is. (RESEARCH DOLLARS NOW, PLEASE!!!) Then I found myself crying as we remembered friends who've passed away, and I tweeted this:

I do not want my son to have to remember me. #bcsm
— Jennifer Campisano (@JCampisano) March 3, 2015

I am also extra emotional because Chris is FINALLY home after four weeks in Africa, because Quinn turns four this week, and because I have a scan on his birthday. It's as if, with Chris back, I can let my guard down and let all this pent up emotion out. I no longer have to run the household by myself, be a single parent (my utmost respect and awe to those of you who are always single parents), or worry as much about the bogeyman every weird noise at night.

Today was emotional, but also inspiring in so many ways. I was proud of how this community rallied to get our voices heard. I hope I can continue to be a part of that rallying cry for many, many years to come.

"She is part of a new national effort to try to treat cancer based not on what organ it started in, but on what mutations drive its growth.

Cancers often tend to be fueled by changes in genes, or mutations, that make cells grow and spread to other parts of the body. There are now an increasing number of drugs that block mutations in cancer genes and can halt a tumor’s growth."

"The test uses computerised imaging of tumour samples and statistical analysis to measure the number of immune cell ‘hotspots’.

Researchers found images of hotspots where immune cells were clustered together around breast cancer cells provided a better measure of immune response than simply the numbers of immune cells within a tumour.

They split women with breast cancer into two groups based on the numbers of immune hotspots within their tumours. Women whose cancers had a high number of spots lived an average of 91 months before their cancer spread, compared with just 64 months for those with a low number of spots.

The test is the first objective method of measuring the strength of a patient’s immune response to their tumour."

Welcome

Writing about my journey at the intersection of metastatic breast cancer and motherhood. Diagnosed with Stage 4 cancer at age 32 and when my son was just five months old, this is the story of how I've learned to take life one day at a time -- through treatment, potty training, and, eventually, recovery.